When I heard the news of Christopher Reeve’s death, I felt great sadness, fear, anger and some loneliness.
Only quadriplegics and their loved ones know what we go through. Christopher Reeve died of an infection related to a decubitus ulcer. Most are unaware that we get these ulcers (also known as pressure sores or bed sores) from sitting in one position for up to 18 hours a day.
Most also don’t know about the wild fluctuations in blood pressure or the bladder infections or of the consequences of catheters or the difficulty regulating bowels or the violent spasms that can wreak havoc with our daily lives. Most just think we are paralyzed and would like only to walk.
Personally, I don’t care about walking. I have a pretty nifty wheelchair that takes care of that. But if someone could find a way to make my bladder work, now that would change, and certainly prolong my life.
My story can be repeated for everyone who has spinal-cord injury. It can be repeated for anyone who has diabetes, Alzheimer’s, Parkinson’s, or all of the other illnesses in which stem-cell research could have an impact. When it comes to diabetes, most of us think they just have to test their blood, watch their diet, and take their insulin. We don’t know about the wounds that don’t heal, the blindness, amputations and often premature death that often go with diabetes. We don’t see the suffering.
And the suffering sometimes becomes unfathomable. Not just for those with these horrible illnesses, but for their families. For the rest of my life, I will be haunted by the look in my parents’ eyes the first time they saw me in a wheelchair. I hope no one suffers like they did. But they will.
When Reeve died, I felt sadness in the same way a soldier must feel when a friend dies in combat. I lost a fellow quadriplegic – a fellow warrior. He was a man about my age who lived with his injury for nine years. I’ve lived with mine for 25. That’s why the sadness. That’s why the fear. But I am not so much concerned about me. I’ve had 25 years to accommodate this disability. My fear is for those behind me.
I recently saw a 16-year-old boy for consultation. He had been a quadriplegic for six months. His young mother accompanied him and both looked dazed. But I was most struck by the beauty of his innocent face. He told me that his girlfriend had left him, and he cried when he said he would never know what it would feel like to make love or dance at his wedding.
Nevertheless, the consultation went well. He asked me many questions about how I managed my life and for the first time since his accident, he felt both understood and hopeful. I showed him around my house, invited him to see my van, which was adapted so that I can drive independently.
At the end of the consultation, he smiled for the first time. He was truly grateful for what he received and said so as he and his mother turned toward the door. As I heard his wheelchair go down the hall, instead of feeling gratification, I wept. I cried for all of the suffering I knew he would endure.
And why am I angry about Reeve’s death? I’m angry because we have policy being made by the Bush administration that is based on personal religious dogma and rubber stamped by an obedient Congress. Decisions are made which honor only one’s personal beliefs and fail to make genuine eye contact with those who suffer. Sen. John Kerry talked about using stem cells from frozen embryos, and not the destruction of life. President Bush clings tenaciously to his beliefs and turns his back on everything else.
Stem-cell research is not a miracle. But it does offer hope to those who suffer that tomorrow can be better than today. And most of us who suffer aren’t asking for miracles. We would be happy with one extra year of clarity, the ability to heal a skin wound more quickly, or even a working bladder.
Like George Bush, I pray. So now I will pray that no other parents have to experience the agony my parents lived with.